Day 12,13 – The MS Strikes Back.

I’m Day 2 – Chemo – Surprise ‘Em On the Beaches!
So I wake up feeling good, ready to take on another day’s battle with the ‘Insubordinate T-Cell’s’. After all, the previous chemo infusion may have been nectar for the ease it was to sup.

Planning on taking this day easier than the previous few, having made sure that I was online and caught up with all the amazing message’s I have been getting. (Big love to all!) I decided to let the chemo sink in and let my body have it’s rest as it plots it’s internal battleground.

Getting up to go to loo, it feels like the chemo has heightened my spider MS senses, doubling up my usual symptoms. The MS giving a bit of a counter attack – I’m still here!! I take myself to the loo a little more careful than usual, a touch dizzy but totally fine. No biggie at all, it was a pretty poor attempt – like throwing a rock at the chemo tank.

I get into bed, crack open the laptop next to me, put on an easy film to fall asleep to. Things are going well. …and relax! Only then as I’m about to drift off into slumber, I get this feeling that I’m tangled in wires, proper spindly little ones – Wha? – Where? – How? …I realise that I hadn’t quite sunk into that ‘sleep reality’ yet, I opened my eyes to see that all was okay and Doctor Fedorenko wasn’t actually trying a new experimental treatment on me. 😉

So, still very comfortable, time to drift off again. …next in walks a few elderly gentleman pointing at me ‘who’s this?’ – What do you mean who’s this, you’ve just come into… [Nope – Open eyes] …what IS going on here? Ah this must have been what Mindy Watt was talking about during her own care (Facebook UK HSCT Group), saying how she saw little aliens. Small hallucinations that come with the chemo, easy but still bizarre all the same.

Right come on people, I’ve got a body with some cleaning up to do on the inside – leave me be! Nope just again as I drift, suddenly a wave of panic sets over me! Visions of water flooding up from the keyboard of my laptop!!! …Ha, you’re not having me this time!! I open my eyes to a dry laptop and beautifully to the moment Will Smith punches an alien square in the face “Welcome to Earth”. I then fall into a great sleep. Poetic Mindy?

After rest I get a knock on the door from another patient, ‘fancy getting out for a walk?’. Yeah why not, I was feeling rather good after that sleep. Bit of fresh air and all that. Unfortunately for us Starbucks haven’t popped on every corner here yet (small mercies), but instead all we could think of was a place that was half an hour away, my walking isn’t good – it’s absolutely not half an hour good. An intelligent thought would be that shouldn’t be our only option, but I powered on. …We’ll get a cab back!

We arrived (very comfy chairs!!), good chat, ate some food and drink – conscious of our delicate chemo stomachs too. Then down to some bad planning on our part our cab wasn’t available. Bugger!

MS The Invisible Disease – The MS Strikes Back *Caution urged*

It was cold outside too. Fortunately I had a big jumper keeping my upper warm, but it’s my legs that suffer in the cold – like an old man they go TinMan. Together with only having a fraction of the feeling I used to have below the waist, it didn’t make for a pleasant walk back. It was however perked up by bumping into Anastasia walking back from the office, a little chat – ‘You haven’t seen us right ;)’. Then back into to my room around 9pm. Very fucking* tired indeed!

*apologies, but called for!

To make matters worse, that lack of sensation below the waist meant that I had made an unknown minor (contained) mess of myself below. No energy, cold, no muscle, no feeling – sh it happens!

Energy-wise, I’m now running so low on fumes. I somehow get into the shower, clean myself down, garments too. Get into bed clothes and relax, hoping the exertions don’t have any lasting effect. Borrowing tomorrow’s energy come at a very high premium.

So I’m in bed, slightly wired from the shock of it all. Thinking up comical words of relaxation wisdom – Whooossssa! *ching ching* To calm myself to sleep.

*Double caution – Careful now!*

I think less than half hour into getting the rest, I noticed an intense pressure in my gut. Wow! I don’t think I’ve ever known anything like it, it happened far too quickly to be painful. That was the ‘chemo diarrhea’ I had heard about. I’ve heard about changing babies nappies, but that was something I’d never seen before.

By this point it was around 2am, I won’t say it* again but I was tired!!!! And a little worried for my day three of chemo, after all – the drug builds up. The nurses were wonderful and made sure I was comfortable again. Just a shame I then had the most broken sleep for a long time, conscious of every bodily movement, needing to pee every half hour, finding that I’d already started at times too. The problems of a very dysfunctional nervous system at it most disobedient.

Leaving the detail there. But I’m sure many MS sufferers will know what it’s like, when your body is at it’s very lowest ability to cope – it just won’t look after you!

I spoke to Dr Fedorenko this morning about my evening, and he was far from phased, which was reassuring, because I knew this was more down to overexertion on my part rather than the chemo – it just added to it.

SO! There’s me wanting to show how little there is to fear about this treatment, and I go and wreck it all for a coffee. I could have kept to the smooth, but I didn’t think I’d be doing a service if I didn’t express, even if it wasn’t my proudest moment. But all is absolutely good again.

Edit. Please remember the soul purpose of this blog is for fellow MS suffers to get an understanding day-to-day about my days here in Moscow and what to expect for themselves, and there’s nothing to fear about the treatment. If casual readers think I’ve given too much detail and perhaps should have saved face. MS is not pretty, but this is the strife I have been living with for eight years and needs to be told. I have also made the blog fun too, because that’s what I do. 😉

Day 3 – Chemo – Getting to the bunker

I’m having a selfish day today, yesterday I felt great until I went out. And confidently would have carried that on from where I left off. Today actually now that my body has settled, my third dose, has been smooth, without issue, so far without aliens, wires or old men.

So far I’m really surprised how easy the chemo has been to take. I’ve had no real effects to talk off. No nausea, no headaches, I could even argue that I don’t feel any different, perhaps just a little more tired. Hmmm, avoidable mishap aside.

Now day 13 into my treatment

I’ve had steroids, stem cell stimulants, tubing/drips, collection, chemotherapy, and I would never have imagined that I could have felt this comfortable! Ingrowing toenail I’ve heard is worse!!

There’s me wanting to put a brave face on for Russia, the team here have made me so relaxed, I don’t know what any of the fear could have been for.

Many people receive chemotherapy so many reasons. Mine brings me relief. I’m very fortunate.

My day 13 has been as good as any other. Just don’t give the MS a chance to spoil your day, I wish it didn’t mine.